Leave the Ladders in Place

There has always been a great deal of discussion in the disability community about allies. Most of that discussion takes place in terms of who deserves that title in regards to persons with disabilities. But it’s a valid discussion for parents and families, too.

Regarding our constant search for potential allies, I read something today that surprised me. In 2004, Texas Attorney General Greg Abbott (who has been in the news lately after announcing his own bid for governor) launched an effort to strike down part of the Americans with Americans With Disabilities Act. Without going too deeply into my own politics, I will simply say that this didn’t surprise me because he’s a Republican. Despite being signed into law by a Republican president, the ADA has drawn fire from such notable Republicans as Clint Eastwood and former Atty. Gen. John Ashcroft. Even Rick Santorum has taken his shots at the ADA, despite his own child with a disability. I think it’s safe to say that a lot of Republicans don’t like it, and in that respect, it’s hardly surprising that Greg Abbott would feel the same.

No, it surprised me because for the last 29 years, Greg Abbott has been in a wheelchair.

When Abbott became Atty. Gen., Texans with disabilities thought they had an ally. That didn’t last long; in 2002, his office launched a constitutional challenge of a section of the ADA that prohibits public entities from discriminating against people with disabilities. (Abbott also built his first campaign for Atty. Gen. around strict tort reform after receiving a $10 million settlement for the accident that put him in a wheelchair. I’m not actually sure what to say about that. Perhaps Greg Abbott simply isn’t a “cause-and-effect” kind of guy.)

I’m not bringing this up to say that Greg Abbott is a bad person. It appears that he’s loyal to his party and its positions on disability rights, and I suppose that’s something to be acknowledged. I wouldn’t vote for him, but I would never insist on some monolithic conformity of belief within the disability community, and I won’t pretend to see into his heart. His soul’s his own business.

But Greg Abbott illustrates just how complicated our search for allies can be. We look for policymakers whom we believe will understand, often because they themselves have disabilities, or have loved ones who do. We search for other families who have gone through what we have. We put our trust in therapists and teachers who have seen so many kids like ours, and whom we think are doing the work of the angels. We hope that our own families will get it.

But policymakers live and (professionally) die by their loyalty to their parties and their interests. Whichever part of the political spectrum you personally believe in, you’re very likely at some point to be gravely disappointed. Other special needs parents can judge and play the Pain Olympics, calling into question the choices that your doctors, your child’s teachers, and most of all you as parents have made, often based on ridiculously incomplete information and informed solely by their own experience. Occasionally, teachers and therapists can lose their faith. They can sometimes make choices that are ultimately in their own best interest, and if they do get it wrong with your kid, well, they’ll just have to try and get it right with the next one.

And family can break your heart right in two.

For those of us charged with caring for and helping to build independent lives with loved ones with disabilities, trust can become hard to extend. We’ve all been burned. When we see someone like Greg Abbott build a career with the benefit of a lot of good people’s hard work, only to pull the ladder up behind him, we’re not shocked.

We’ve seen that before. And we’ve gotten pretty good at choosing our allies. For those of us who are parents and family, we work hardest of all at becoming effective allies for those we care about.

Sometimes we fail. But we can’t give up. And hopefully, we leave the ladders in place.

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About The Author

Rob

Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.

After I became disabled, I was fired by a white woman (I am a white woman) who had risen to President, screamed at and abused by an African American who was gunning for the white President’s job (and got it) and the right in your face abuse was doled out by two white people close to my same age. Subsequently I offered friendship and forgiveness to the every one of them and they replied ” “.

I wonder if any of them feel guilty. We had all worked together on a most congenial basis for many years.

Been here, done that. I spent 2 full school years missing a lot of class time because a surgeon screwed up an operation. None of my other doctors will admit the possibility that a doctor messed up (though to my great surprise, one doctor apologized to me today for a misunderstanding). Instead I am blamed for not following post-op instructions or refusing to take a pain medication that made me very sick (and to which I had an allergic reaction severe enough to land me in the hospital for a week a month following the surgery). My direct supervisor went from respecting my work and telling me I did a good job in my classroom with my students to taking away the part of my job I loved (working with students with significant special needs). She also started insisting on doctor’s notes, and on a few occasions, refused to allow me to leave for appointments despite the overall school district certifying me under the Family/Medical Leave Act. My doctors refuse to understand or make any effort to schedule what they consider necessary procedures at times that I don’t have school. I have a chronic disease now caused by all of the antibiotics and the infection from the original surgery, and have had 12 additional procedures that required sedation in the year and a half following the original surgery. I was psyched to celebrate a year of NO surgery or procedures this month, and one of the doctors had to ruin it by insisting on what he considers an absolutely crucial procedure. So, if I want it done before I go back full time (I am one of those teachers who works at least part-time during the summer), it’ll be done in the next week… and blow my full year. I’ve also had friends walk away because they just don’t get it.